VICTORIA, BC LYME RALLY

well, this weekend was the BIG event!

 as part of the World Wide Lyme Protest, we took part in a Lyme Awareness Rally in front of the Legislative Buildings in Victoria, BC.

On our way!

thanks to a generous anonymous donation, our family was able to attend. even harrison. he was raring to go. and as you will see from pictures, he insured that he was as visible as possible. i think the funniest is him peering over the shoulder of david cubberley, the director of the board of the canadian lyme disease foundation (canlyme), in the group shot.

ol' harri soaked in the attention he received from his adoring fans. he was a busy guy - working the crowd, kissing babies, taking advantage of as many photo ops as possible, and well, just meeting the people where they are at...
if i didn't know better i'd think he was running for office.

it was a long day. we left our home at 8:30am and did not arrive home until 9pm. both sparky and i have paid the price since but it was well worth it.

On our way home
A little worse for wear and a little sad the day is over

both graham and taylor were slated to give speeches but at the last minute, we made a switch-a-roo. we decided the girls would speak and the boys would be on film and picture duty. i had been asked to give a speech a few weeks back but initially had declined. i had really wanted to take a back seat at this rally and not deal with the stress of writing and delivering a public speech. the last 2 weeks have been incredibly busy and a speech was not even on my radar. yet, as fate would have it, on the night before the rally, i found myself frantically trying to pull something together. with graham's help, i was able to come up with a short speech.

last minute editing on the drive to the rally

fortunately, avery, who is an avid journal writer, had penned 2 entries that were "speech worthy" in recent weeks. however, she was unsure if she had the nerve to deliver them in front of a public audience. in fact, up until the morning of, she had decided she didn't want to. then as we were leaving for the ferry, she said she wanted to bring them with her, just in case...

the ferry ride went by in the blink of an eye as we had about 20 -25 travel companions - lyme friends from our local support group were able to make the trek over. it was a great time just to visit and be with people who truly 'get it.'

it wasn't until we piled into our van to drive off the ferry that avery made the final decision to give her speech. now, keep in mind, she had written two. both were excellent albeit there were a few sentences in each that we figured were a bit too pointed to make the final cut (something along the lines of how she'd like to spank a few doctors) so on the drive from the ferry terminal in Victoria to the legislative buildings, we worked furiously in a mad fast editing session and the final speech was produced just in the nick of time.

she wrote every word of it by herself and delivered the speech of her own accord. so proud of her!

it really was an incredible day. there is something so healing, so inspiring, so empowering about being with those who walk the same journey as you. and being able to come together as a collective group and fight for change. it was wonderful to finally meet in person the dear friends with whom i've forged on line friendships with. there were so many hugs and tears exchanged. i am honored to know and be in community with these very courageous and strong warriors. 

my recollection of the actual program and speeches of the day is actually a bit of a blur. i am so grateful that graham was able to so expertly capture it all and am looking forward to being able to sit down in the comfort of my home, with a good cup of joe and finally soak it all in.

Some of the Rally Speakers
(thx to SB for this collage)

as soon as we are able to edit the footage into uploadable formats for your viewing, we'll be posting them here on the blog as well as facebook and youtube.

so stay tuned!

we hope that you too, will put your feet up, grab a cup of coffee and watch!

EMBRACING THE MOMENTS

it was quite the weekend.


i think we racked up more activity in 3 days then we have in 3 months.


we went to a movie
and
went to church
and
went ice skating...

eyes alight, bodies moving, smiles glowing
tentative first steps, arms flailing, knees shaking, balance found, then off with great gusto
the crispness of the frosty air,
feel its invisible flow across my cheeks and through my hair
jittery nerves, must breathe deeply
inhale that stale icy arena scent 
warmth from movement gently easing away sedentary chill 

parker zipping by,
avery delicately gliding past
both beaming with the exhilaration of the moment
"look at me, mom! look at me!"

graham, mr photographer extraordinaire, racing ahead to capture the moments
or 
romantically sidling up beside me
hand in hand, round the rink we go
we're doing it. together. 


i nearly lost it as i glided slipped and slid my way across the ice
being there
in the moment
fully embracing it 
proved to be a much bigger challenge for me than staying upright on the ice 

there is part of me that is always waiting for the other shoe to drop
it's a learned behavior now
after all, the better days, the able days, the days where the light at the end of the tunnel seems close at hand, those days have never lasted.
the inevitable crash would come,
often in the blink of an eye.
sweet victory hacked off at the knees 
hopes raised, hopes dashed
hope falls prey to ruthless loss
unmercifully ushered in on a torrent of gut wrenching grief
bid farewell to doing, to being, to living again and again and again.


these repetitive losses have tainted my ability to be fully engaged 
they gnaw on my shoulder, grasp my belly and tiptoe through my heart 
i so fear the agony that comes when that tentative sense of well being is ripped from my grasp that i am scared to fully embrace the joy of the able bodied moments
to hug it tight, to whoop it up, to shout it from the mountain top
to sink into the joy and lose myself in the exhilaration of it

the protector in me, the survivor whispers cautiously;
spare yourself some grief
celebrate from a distant place
hold utter exuberance at bay
guard your heart
for tomorrow
this could all fall apart


this weekend, in that rink, it dawned on me


the grief is fully felt; even if the joy was not


this weekend, parker's wheelchair sat empty
tomorrow it may not.
i will not allow the fear of tomorrow to over shadow my joy in today.

i will fully embrace the joy of this moment without fearing the pain that the loss of it will create.

i will celebrate this moment with every fiber of my being
i will allow myself to embrace it with whole hearted gusto
i will cry, i will laugh, i will move, i will breath
and
i will not worry about what tomorrow will bring
come what may. come what might.

after all, i've survived every loss and fought my way back to victory every time. if i have to, i'll do it again. and again. and again.

.

"you gain strength, courage and confidence 

by every experience in which you really stop to look fear in the face. 

you are able to say to yourself, 

"i have lived through this horror. i can take the next thing that comes along." 

you must do the thing you think you cannot do.

                                             -eleanor roosevelt

OUR BONUS DAY

today (sept 4) was officially our last day in whistler
(this was confirmed by reliable sources)

since we thought yesterday was supposed to be our last
i guess you could say today was our bonus day

a whole extra day of holiday
yippee....not!
seeing as our bonus day now includes a gondola ride
i'm thinking i should a left when i had the chance!

i spent most of the morning worrying about it
my stomach in knots
bile rising in my throat
my mouth an acrid desert
my knees weak
and my heart pounding in my ears
whenever
i thought about getting on "the ride"



i'm not kidding either
i really considered hanging back today
yikes, don't say 'hanging'

back and forth my mind and spirit sparred
i did not want to scale that mountain!
no way
no how
no can do
however
it was not lyme that stood in my way

i am well enough
i am able enough
i am strong enough
no it is not lyme that would impede my ability today

it is FEAR
the choice is clear
how can i even consider allowing fear to hold me back?


my yesterdays have included the use of a wheel chair
my tomorrows may include many more

but
TODAY I AM ABLE...ain't nothing going to stand in my way!

"Come to the edge." he said
"We can't. We're afraid."

"Come to the edge." he said
"We can't. We will fall."

"Come to the edge." he said

And they came...

And he pushed them....and they flew.

-(Guillaume Apollinaire)

our bonus day...
has been so much more than just a breathtaking ride up a mountain

our bonus day...
has been about facing whatever mountains stand in our way and trusting God to give us the courage and strength to scale them.

"when faced with a mountain, i will not quit! i will keep striving until i climb over it, find a pass through, tunnel underneath or simply stay and turn the mountain into a gold mine, with God's help."

our bonus day?
well, i wouldn't trade it for the world